I dont want to be a party pooper, but I'm reserving judgement on XMRV as THE CAUSE OF CFS.

It could well be a virus which we catch due to a common immune problem with PWC's, namely the unbalance between TH1 and TH2 parts of the immune system.

We tend to have a strong TH2 section of the immune system which fights auto immune problems and a very weak TH1 immune defence, the side of the immune system that fights off viruses by Natural Killer cells. AIDS victims have a similar inbalance of their immune system.

This inbalance means when we are confronted by a virus such as XMRV the TH1 is unable to provide an adequate defence against it.

When this happens RNaseL is brought into action to perform a " holding operation" by stopping replication of the virus but not being able to wipe it out like a fully functioning balanced immune system.

Eventually the RNaseL runs out and we are at the mercy of the virus.

This could explain why we are getting the various levels of antibodies of XMRV reported.

PWC's are at varying levels of Th1 function,some are taking supplements that correct the immune inbalance, others are at varying levels of this "RNaseL fight" which is taking place, and some have a genetic RNaseL defect which means they cannot put up a fight against the virus replicating.

Paul Cheney summed up the TH1/TH2 immune inbalance problem many years ago.
(This is an edited version of the article-you know how Dr Cheney goes on and on......)

Researchers have demonstrated that most CFIDS patients end up stuck in Th2mode. This has several consequences.

When the Th2 system activates, it blocks the Th1 system. This suppresses the Th1 weapons, particularly NK function. Accordingly, there is also an increase in the Th2 weapons - the white cells and antibodies. Most notable is increased antibody production. Dr. Cheney said that if you measure antibodies to anything a CFIDS patient has ever been exposed to, they will very likely be elevated.

Cheney notes that other problems ensue. Patients get into trouble on both sides: they overreact to things on the right side and under-react to those on the left. When they are Th2 activated, they no longer have the defense mechanisms to keep dormant all the things they caught in the past. They cannot suppress or control them anymore, and the EBV, chlamydia pneumonia, CMV, etc. reactivate. The yeast also begins to appear.

The only defense against being eaten alive at this point is RNase L.

RNase L cannot kill any of these things. It only stops them from reproducing. According to Cheney, "It's a line in the sand saying 'No more replication', and it waits for Th1 to come and kill them. But Th1 never comes. RNase L sits there and grinds away, possibly going up and down as the pathogens activate and reactivate. But they never get wiped out. RNase L holds the line, waiting for the cavalry that never arrives."

While it is valiantly trying to hold the line, it is also chewing up human messenger RNA, inhibiting all the enzymes in the body, disrupting protein synthesis, and generally making patients miserable. As RNase L grinds away, it eventually shifts into "after-burner" desperation mode - the more powerful and deadly low molecular weight form discovered in CFIDS patients by Suhaldonik.

Cheney commented "RNase L is a very good anti-cancer defense. So as long as you're involved in this scenario, you don't get cancer. But a lack of growth hormone will wipe out RNase L, and we now know there is profound loss of growth hormone in CFIDS. Growth hormone is responsible for protein synthesis, and RNase L is a protein. So if you lose growth hormone, you lose protein synthesis, including RNase L. That may explain why, as the disease wears on and you get more injury, you stop seeing high levels of RNase L. You can't make it anymore."

He believes this is a very scary situation. Patients are Th2 activated and Th1 suppressed. The things on the left come out and there is nothing to stop them. There is no Th1, and eventually no Rnase L. He also believes patients need to balance the immune system - to push it a little more towards Th1. That way they will lose some of the overreaction on the right and gain some control on the left.

Cheney recommends the following to help shift the immune system from one mode to another. They are called "right to left shifters". Three of them are published, or near publication.

1) Kutapressin (published, prescription)
Kutapressin is an immune modulator and a broad spectrum anti-viral. Dr. Cheney has found that it is most effective when the dose is varied or "pulsed". The dose should vary from 1 to 4 cc daily; see the section on Isoprinosine for this theory. Dr. Cheney strongly suspects Ampligen is a right-to-left shifter also. He has said in the past that Kutapressin is rather like a weak form of Ampligen.

2) Isoprinosine (published, prescription)
Published for use in CFIDS, this anti-viral enhances NK function. Dr. Cheney believes it would also be good against intracellular bacteria since it is a Th2 - Th1 shifter. It appears to raise IL-12 and lower IL-10, which turns off Th2 and turns on Th1.

It is also called Imunovir and is very nontoxic, very safe. It has been approved in Europe and Canada for just about any viral infection for 18 years. It is not approved in the US (for political reasons, not safety concerns) but is easy to get from Ireland with a prescription. Contact Newport Pharmaceuticals at 353-1-890-3011, fax them at 353-1-890-3016 or email them at info@newport-pharma.comThis e-mail address is being protected from spam bots, you need JavaScript enabled to view it

Week one, take 6 tablets a day, Monday through Friday, and none on the weekend. Week two, take 2 tablets a day, Monday through Friday, and none on the weekend. Repeat this cycle. But do not treat every month. Do two months on and then one month off of this "pulsing" dose. This medicine works best when you do not treat regularly. If you treat continuously at the same dose, it stops working. It is an immune modulator, and Dr. Cheney suspects all immuno-modulators are like this. If taken continuously they stop working. The dose must vary so the immune system never knows what to expect.

3) Pine Cone Extract (supplement, www.pinextra.com)
Cheney said, "They make a tea from this in Southern Japan and they have significantly reduced cancer rates. It's thought to work at the gene level in lymphocytes, where it turns on IL-12. It also shuts down IL-10 at the gene level, and that causes a shift towards Th1. Pine Cone extract is expensive, but at just 10 drops a day (in the morning), of all the possibilities, it's probably the cheapest per day." It is called PineExtra, and 1 oz is about $60, but it lasts a long time.

4) Earth Dragon Peptides (supplement, http://www.nutricology.com, http://www.needs.com)
Earth Dragon is round worm peptides. It causes a shift to the left, and is believed to be very similar to IL-12. There has been a huge surge in the use of ED peptides to treat Inflammatory Bowel Disease, specifically Crohn's Disease. One professor at UNC treats all his Crohn's Disease patients with Earth Dragon. It is very non-toxic and safe. This is a good choice for those who want to balance their immune system and also have bowel problems. Earth Dragon is about $36 for 150 caps. The dose is two a day.

5) Heparin (prescription)
Heparin is a Th2 - Th1 shifter. One advantage for many patients is that it is also an anticoagulant. Dr. Cheney only recommends this if a patient has a coagulopathy. About half of his patients do, according to the ISAC test. (See http://www.hemex.com or "Blood Related Disorders in CFS/FM.")

6) Formula 560 Transfer Factor (to be published, supplement, http://www.immunitytoday.com)
Formula 560 is an immune modulator. Dr. Cheney likes this product. It reportedly works against HHV6 and Lyme Disease, as well as other problems. It costs about $585 for the first three months, then the dose drops one-third. It averages out to about $130 a month for the first six months, and $65 thereafter. (The cost of this product has reported dropped since this was first published.)
NOTE: Pro Health is an additional source for the Transfer Factor products (we carry the Formula 560 as well as the exact same product and from the same manufacturer that we call Transfer Factor 6000 and sell it for less).

Which should you use? Cheney recommends that you pick one and see what it does to your NK function. It is a question of whether it will work and how much it costs. NK levels will rise if there is a shift from Th2 towards Th1. Before beginning one of these products it is best to get a baseline on NK function. Then test again after having been on the product for one to three months. Dr. Cheney uses the lab of Mary Ann Fletcher, an NK specialist and colleague of renowned researcher Nancy Klimas, at the University of Miami. Her lab is no more expensive than commercial labs, and is top quality. Cheney emphasizes that you must have a quality lab do this test: do not use just any lab. For test information, phone 305-243-6288 or fax 305-243-4674. The test is called "Natural Killer Cell Function Assay" and costs $350.

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This is a more concise article on the TH1/Th2 balance of the immune system with some cheaper supplements than Dr Cheney proposes, to help correct the inbalance and start the fight against XMRV, whether it proves to be just another virus or the answer to CFS.

Personally, I hope XMRV turns out to be the basis of CFS and we can all get cured and go back to living normally again. Wouldn't that be great.

Professor of psychiatry is quoted as saying this in the UK's Independent newpaper:

"It's spectacular but needs replication. And I hope that no one is thinking of prescribing anti-retrovirals on the basis of this," said Simon Wessely, professor of psychological medicine at King's College London. "It's very preliminary and there no evidence to say this is relevant to the vast majority of people in the UK with the condition."

After 50 years of debates about what to call this entity, WPI has coined it XAND (X associated neuro-immune disease). Not to be missed is the fact that they have already implemented the new name into one of their press releases yesterday.

"Those with XAND (ME/CFS) and/or fibromyalgia, interested in participating in research studies to further the development of diagnostic tests, should complete the questionnaire available at
www.wpinstitute.org." [Note that the questionnaire is not to be found (yet) on their website.]

What does everyone think about the name XAND? Do we say "zand" or X-and?

Professor of psychiatry is quoted as saying this in the UK's Independent newpaper: "And I hope that no one is thinking of prescribing anti-retrovirals on the basis of this," said Simon Wessely..."

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Funny, because that's exactly what the researchers at WPI are thinking: "Mikovits and her colleagues are investigating already-approved antiretroviral drugs to see if these will benefit people who have chronic fatigue."

Caledonia pointed out that we'll be curious to see the antibody rate in healthy controls. I'm sure it will be higher than 4% but I'm also pretty certain it won't be all that high. Nothing like 98%.

And all viruses are handled differently by different hosts. One percent of Caucasians for instance are immune to HIV because they lack the receptor that it uses to dock on and invade cells when it first enters the body. That receptor is somewhat redundant (other receptors in the body can serve its purpose) so the person is both immune and healthy.

So there will be people who handle this virus--or seem to--we don't know how increased their risk of various cancers are.

I know the researchers are saying this is not a laboratory escape. Maybe not. And maybe it's not necessary at this point for the scientists to ask. They're doing good science.

Nonetheless I wonder why we had, all around the same time period in our history, epidemics of HIV, disabling forms of lyme disease, and CFIDS (XMRV). As I said I'd really like to see if ticks have XMRV and am going to personally make some requests (not that I have any sway but I'm just going to make a case for it).

Although HIV gained early notoriety and tons of scientific funding, Lyme disease and CFIDS (if the same or different) were treated exactly the same by the CDC. They were poo poohed as either psychological or minor. Good evidence from other scientists was methodically marginalized and destroyed. Is it really just incompetence enshrined? I'm not a conspiracy theorist but it takes me just a few tiny baby steps to say that the military-industrial complex was working on this stuff and it was either tested or escaped.

A retrovirus associated with cancer is linked to chronic fatigue syndrome.

There is little consensus in the medical community on whether chronic fatigue syndrome is a distinct disease. As its name implies, the condition is characterized by debilitating fatigue persisting for many years, and it affects as much as 1% of the worlds population. Although chronic inflammation is often found in these patients, no infectious or toxic agent has been clearly implicated in this disease, which is diagnosed largely by excluding other conditions that cause similar symptoms (1). In this weeks Science Express, Lombardi et al. (2) describe the detection of xenotropic murine leukemia virusrelated virus (XMRV) in about two thirds of patients diagnosed with chronic fatigue syndrome. Both laboratory and epidemiological studies are now needed to determine whether this virus has a causative role, not only in this disease, but perhaps in others as well.

Chronic fatigue syndrome is not the first human disease to which XMRV has been linked. The virus first was described about 3 years ago in a few prostate cancer patients (3), and recently detected in nearly a quarter of all prostate cancer biopsies (4). It has been isolated from both prostate cancer and chronic fatigue syndrome patients, and is similar to a group of endogenous murine leukemia viruses (MLVs) found in the genomes of inbred and related wild mice. Although a half century of studies on MLVs and other gammaretroviruses have led to important discoveries on which much of our current understanding of cancer rests, there has been no clear evidence demonstrating human infection with gammaretroviruses, or associating these agents with any human disease.

Endogenous viruses, such as xenotropic MLV, arise when retroviruses infect germline cells. The integrated viral DNA, or provirus, is passed on to offspring as part of the host genome (see the figure). Endogenous proviruses form a large part of the genetic complement of modern mammalsabout 8% of the human genome, for example. Xenotropic proviruses first entered the mouse germ line about a million years ago, but cannot infect cells of the mice that carry them because of a mutation in the cellular receptor for the virus presumed to have arisen after viral entry into the germ line. The propensity of xenotropic MLVs to infect rapidly dividing human cells has made it a common contaminant in cultured cells, particularly in certain human tumor cell lines (5).

There is more than 90% DNA sequence identity between XMRV and xenotropic MLV, and their biological properties are virtually indistinguishable (69), leaving little doubt that the former is derived from the latter by one or more crossspecies transmission events. There are several lines of evidence that transmission happened in the outside world and was not a laboratory contaminant. One is that XMRVs from disparate locations and from both chronic fatigue syndrome and prostate cancer patients are nearly identical: The viral genomes differ by only a few nucleotides, whereas there are hundreds of sequence differences between XMRVs and xenotropic murine leukemia proviruses of laboratory mice. Other evidence includes the presence of XMRV and high amounts of antibodies to XMRV and other MLVs in chronic fatigue syndrome and prostate cancer patients.

There is still much that we do not understand. Whether the virus plays a causative role in either chronic fatigue syndrome or prostate cancer is unknown. For example, XMRV infection might, coincidentally, be more frequent in the same geographical region as a cluster of patients with chronic fatigue syndrome. And individuals with either disease might be more readily infected due to immune activation. XMRV might prefer to grow in rapidly dividing prostate cancer cells (10), and the presence of rapidly dividing cells in either condition might make infection more readily detectable. We do not know how the virus is transmitted, and the suggestion, based on indirect evidence, that there is sexual transmission (8) is premature. Given that infectious virus is present in plasma and in blood cells, blood-borne transmission is a possibility. Furthermore, we do not know the prevalence or distribution of this virus in either human or animal populations, and animal models for infection and pathogenesis are badly needed.

Two characteristics of XMRV are particularly noteworthy. One is the near genetic identity of isolates from different diseases and from individuals in different parts of the United States. The two most distantly related genomes sequenced to date differ by fewer than 30 out of about 8000 nucleotides. Thus, all of the XMRV isolates are more similar to each other than are the genomes isolated from any one individual infected with the human immunodeficiency virus. In this respect, XMRV more closely resembles human T cell lymphotropic viruses (HTLVs) isolated from the same geographic region (11). As in the case with HTLV, the lack of diversity implies that XMRV recently descended from a common ancestor, and that the number of replication cycles within one infected individual is limited.

Another notable feature of XMRV is that the frequency of infection in nondiseased controls is remarkably highabout 4% in both normal individuals from the same geographic region as infected patients with chronic fatigue syndrome, and in nonmalignant prostates. If these figures are borne out in larger studies, it would mean that perhaps 10 million people in the United Sates and hundreds of millions worldwide are infected with a virus whose pathogenic potential for humans is still unknown. However, it is clear that closely related viruses cause a variety of major diseases, including cancer, in many other mammals. Further study may reveal XMRV as a cause of more than one well-known old disease, with potentially important implications for diagnosis, prevention, and therapy.

One thing you can be sure of, terms used in the report like MILLIONS COULD HAVE THE XMRV VIRUS and COULD POSSIBLY BE SEXUALLY TRANSMITTED, will be like a red flag to both governments and big pharma. When it was just prostate cancer victims who were suffering with XMRV it wasnt worth bothering.

Now there are millions of votes to be lost by politicians if these statements turn out to be true and they dont do anything about it, and there will be
millions of $$$$$$$$$$ to be made by the vaccine/drug companies.

Watch out for a vaccine that will never undergo clinical trials being developed and rushed onto the market that will eventually kill more people than it cures, along with conditions like "you cant sue us if it all goes wrong" aka the swine flu vaccine. Yes I know, I'm a cynic(I prefer the term realist).

Here is another interesting connection that hit me as soon as I woke up this morning. Low dose naltrexone (which I am taking) has been shown in studies in Africa to stop the HIV virus from turning into AIDS. It has also stopped the progression of immune damage in patients who already have AIDS.

"The safety as well as potential efficacy of LDN in preventing AIDS was discovered by Bernard Bihari, M.D., a Harvard-trained New York physician, in 1985. Since that time Dr. Bihari has treated more than 350 patients, 94% of whom have remained HIV positive without progression into AIDS for up to 18 or more years so far. Many of these individuals received only LDN and some used LDN as an auxiliary to the evolving HAART drugs....

" Dr. Bihari, Dr. Abdel Kader Traore` (and other health officials at the University Hospital in Bamako in Bamako, Mali), and more recently Dr. Jaquelyn McCandless, have created a protocol for a controlled, non-placebo study involving 250 adult volunteers, all of whom are HIV positive but have not yet developed any AIDS symptoms. The protocol will test efficacy of LDN alone compared to the current HAART medications as well as the combination of the two. The Malian government is fully supportive of this study and will provide the HAART medications needed."

Dr. Jaquelyn McCandless has used LDN extensively to treat autistic children --with good results. She has a Yahoo Groups forum on autism and LDN.

One of its mechanisms in the immune system (it has many) is to shift the balance from Th2 dominance to Th1 dominance.

I have felt much better on this medication and while I don't know which of its many effects is helping, this possibility is quite interesting. Perhaps if it is effective against HIV it could possibly be effective against XMRV?

It is also interesting to me that my ex-husband has prostate cancer...hmmm.

We tend to have a strong TH2 section of the immune system which fights auto immune problems and a very weak TH1 immune defence, the side of the immune system that fights off viruses by Natural Killer cells. AIDS victims have a similar inbalance of their immune system.

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Does anyone know where to get a TH1/Th2 test. I mentioned this to my doctor, he is open to this, but he says he doesn't know of a test for this imbalance.

In the 32 years that I've had CFS, no one I've been in a sexual relationship with has had it--either prior to or after our involvement. The man I was living with when I first became ill did not have it then, and doesn't currently have it. And the man I've been with for the past ten years doesn't have it--he didn't get it from me.

I never had a transfusion in my life, so I couldn't have gotten it from blood.

And what about the people who recovered from CFS by addressing non-viral issues, like heavy metals, and environmental toxin overloads... ?

There is more that needs to be known about this. STill I'm really glad they are making some progress. And I sure look forward to the test--available in 6 months!

I'm somewhat skeptical of their speculation about sexual transmission as well. None of my partners have ever shown any evidence of either a) having it before I got involved with them and b) getting it after my involvement with them.

However, if you assume it is sexually transmitted - if you look at sexual transmission rates of HIV, they are actually quite low, depending on the phase of the illness - from 1/100 chance to over 1/10,000 chance of transmission via heterosexual intercourse - among unprotected partners. So I guess its possible to have it any never infect anyone/be infected? Who even knows if it behaves like HIV as far as transmission or not. People just assume because its a retrovirus that it must be like HIV, but it could well be nothing at all like it.

Also, my family doesn't have a history of prostate cancer. In fact I don't think anyone in my family or extended family has ever been diagnosed with prostate cancer of any kind.

I did have a blood transfusion when I had an operation before getting ill. But then upon checking up on the donors, all are completely healthy. Including not having a been treated for cancer.

If you have to have a "genetic" predisposition to be made ill by this, then why do none of the people in my family have it, surely I share the same genes as them?

Also on genetic predisposition - did all the people in incline/Royal Free/Iceland/NY/wherever that they had samples from in this studay and who got ill in an "outbreak" all happen to have the same genetic predisposition? All the people in the symphony? All the people in the high school? Seems unlikely? Conversely, if its as communicable as the "outbreaks" might have you think, why do people with isolated cases seem to rarely if ever transmit it/cause illness in others around them?

What about this "stressor" that precipitates the illness in many of the sporadic cases? I never beleived that "stress" caused CFS, but its a comon element in the history of many sporadic cases in the months prior. Does extreme stress/other illness/etc.. need to be present to trigger active infection of this agent, if you have already been exposed?

What about people's report of "mono" and then never getting better? Did the mono trigger the illness, or did the underlying infection trigger the mono? What about people who have "CFS" but don't show reactivated herpes viral infections (EBV/HHV6/CMV) - yes there are some...?

Dannybex - I had the exact same thoughts regarding the girl's basketball team, the orchestra members, etc. - lol. They don't seem to fit the modus operandi of XMRV.

Hillary Johnson mentions an interesting thing in her blog that HIV is a slow retrovirus, which XMRV is not. So XMRV wouldn't be a long simmering thing that would pop up after 20 years, like HIV. But then again, that doesn't explain the 4% of healthy controls with XMRV.

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I think we need to know a lot more about the patient population that was tested. It doesn't seem to fit a lot of different 'types', and now if it's found that these other cohorts don't have XMRV, then will they be told they don't really have CFS/ME or don't have "real" CFS/ME per this definition or that?

Thanks Caledonia,

d.

p.s. Pardon my brain fog, but I thought in earlier articles it said that XMRV was the slow growing one...I'm confused. If XMRV comes on quickly, then it might apply to 'sudden-onset', but perhaps not gradual onset cases?

Does anyone know where to get a TH1/Th2 test. I mentioned this to my doctor, he is open to this, but he says he doesn't know of a test for this imbalance.

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Sorry Andrew I dont know either, I suspect that outside a research lab there isnt one, but Dr Cheney mentioned in his link that there is an assay test for NK cells (at $350).

Personally, I think the best thing to do is get tested for the XMRV(no doubt a test will be widely available in the future), and take some of the supplements recommended in the diagnose-me.com link to raise Th1 levels and then after a few months have another test to see if this is effective against the virus.http://www.diagnose-me.com/cond/C104791.html

There are many natural agents available to help restore balance in an underactive Th1 arm. These include:

Sushi
Here is another interesting connection that hit me as soon as I woke up this morning. Low dose naltrexone (which I am taking) has been shown in studies in Africa to stop the HIV virus from turning into AIDS. It has also stopped the progression of immune damage in patients who already have AIDS.

Click to expand...

LDN is in the above list that improves Th1 so thats why it probably helps with AIDS.

I would be very surprised if healthy controls had not already been tested for antibodies. This would be a blunder of epic proportions. It also would have been caught by others before publication if, as Hilary Johnson writes in her blog, the paper was held since May for verification.

Re: the possibility of sexual transmission. I have long suspected this could have been the case for me as a partner, who had neurological issues at the time I was with him, died of cancer (I believe prostate) at 58. And yet, none with whom I have had relationships since becoming ill have a chronic illness. However, this is not dissimilar to HIV transmission. Women are much more vulnerable to infection with HIV due to the mechanics, so to speak.

I don't know how relevant this is but my father had prostate cancer.

As to any links to stress. Life is stressful. All illnesses and all immune function is affected by stress. And, stress is a normal part of life. I'm quite confident that very convincing connections between stressful life events and anything at all could be made by someone studying statistics 101.

We don't know exactly how XMRV fits into the picture right now. We do know, unless the scientists involved and those publishing the findings had a collective brain fart, that we are infected at rates that are startling and cannot but be significant.

I'm so blown away by all of this.

Koan

ETA The fact that XMRV is thought to be transmissible in saliva could account for the orchestra and the basket ball team. HIV is not transmissible through saliva.

"Anyone surprised that Carter did not mention Thursday's news about the discovery of a virus that might be the cause of chronic fatigue syndrome?

I thought for sure he'd discuss it. Although the new discovery doesn't necessarily bode well for Ampligen. If you read the reports on the new virus, researchers are excited to try existing antiviral drugs, like those currently approved for HIV, to see if they can help patients with chronic fatigue syndrome.

Recall that Ampligen's antiviral track record isn't very good. The drug failed studies in HIV patients, for instance."